A little back story. The last 6 years I have been having all these crazy things going on with me in out doctor one diagnoses after another nothing was working.About 10 months ago I finally found a doctor and he tells me he thinks my symptoms are neurological.So he sends for a CT the next day calls wants me to go for a MRI and that's when I was told I had ACM1. He sends me to a NS.Went to my first appointment we talk a little.He thinks my symptoms are ACM related .He wants more MRI's done couple days before I have them done I found out I was pregnant so I call the NS he tells me to wait on the MRI's .I have been getting worse.Well I had her on 12/13/11 the day before she was born the neurologist at the hospital came to see me gave me exam and he wanted MIR's of my brain and neck.They got one of my brain but not my neck.Here is where I am confused.The next day the doctor tells my I have an 11mm and good csf flow.So if I have good csf flow I should have no symptoms right.
NO,
you can have many symptoms without compression to the fluid,
the cellebum part of the brain, is your senseory area, and things are sent wrong, and causes confusion. this area also works with your balance,
On a normal person the flow of fluid changes when they stand/sit/movments, some experts believe that with chiari this fluid works abit slower, and cause dizzy spells
some experts also think that the fluid compressions and than uncompress, thats why symptoms can come and go, this all depends on overcrowding that you may have in the magnum foremun,
there is so much they dont know bout chiari malformation, but if you have cartoon of a person and you draw a line where the chiari is, and then think everything below that point can be effected.
i spend many yrs with problems, i only had fluid issues last yr, and then had decompression surgery,
also with having the surgery there is no cure it can reduce the symptoms but not be wonderful, in a few there is great improvment, this is something that we all have to learn to juggle, it is tough, but the good thing is you have name to it, and can understand what is happening to you, so it becomes not as scarey.
how are you coping with ababy? do you have any other kids?
joelene
i have 3kids, and thats a handful, i got realy bad after my last one was born, they were thinking i had MS,
im glad i never had more kids since it was hard to cope with the ones i had,
i hope you have good support.
NOpe living proof --i just wrote about this in another post--lol--
i did not have flow restirictions, i had many symptoms many life altering ones
and I DID have decompression surgery BEFORE having flow restrictions!
Sarah did you remember to get copies of scans previously to compair/keep for records- if not is it possible for you to do so? and in future remember to get copies of ANY testing completed on you for your records, and another great helpful tool is keeping a medical journal. Is this new NS known in the Chiari field?
Yes congrats on the new addition.
hi sarah
everything is useful to get, im in New Zealand, and hospitals here dont transfer alot of data and tests that you have done, so i have a folder with every test and appointment info with me, so every doc and hospital can take copies and hopfully be in the same page,
it saves alot of time and also if your memory isnt great you dont have to try to remember them,
joelene